My mother had a stroke in March. She suffered serious cognitive decline and has short term memory issues. She is wheelchair-bound and has left side neglect, so she is not really aware of what her left arm and leg are doing (though she has improved significantly since the stroke and can now take several steps with a special walker and the assistance of her physical therapist). Understandably, she is incredibly depressed. Even before her stroke she was not a happy person -- she has had a very difficult life -- but she is now threatening suicide. The stroke also apparently affected the area of her brain that signals the need to go to the bathroom, so she is in a constant state of anxiety about that and asks to be taken to the toilet incredibly frequently (often every 20-30 minutes, throughout the day). She is on anti-depressants and anti-anxiety medications, which her doctors are continually adjusting. We have appointments scheduled with a urologist and a GI specialist, but the issue seems to be more mental than physical.
Before the stroke, she lived mostly independently in a senior living community. She is now in the nursing home there, which is a wonderful facility with wonderful caring staff (for the most part) but she absolutely hates it. She insists that I take her out of there, but I really see no alternatives until she regains some more mobility. Even at that point, she would need 24-hour care due to her cognitive issues (she does not seem to realize how compromised she is physically and insists she can do things she clearly cannot), which I am willing to arrange/pay for, but I am not sure if the management will ever allow her to do that. She is certainly not able to be in her apartment now, even with 24-hour help (for one, her bathroom is not accessible with the device that she currently needs to get her there). I am also not sure I can manage arranging for all of the care she needs on my own. She is furious with me for not finding an alternative place for her to be and says that, if I do not do something right away, she will stop eating and that it will be my fault. I don't really think she will actually stop eating (she refuses a meal every once in a while but then forgets and eats the next one) but it makes me feel incredibly guilty and sad -- and frustrated. I am her only daughter and she has no friends, so I am really the only outlet for all of her anger. I visit her every day for 3-4 hours but I am not sure how long I can keep that up since all she does is tell me that she wants to die and that I am not compassionate enough. She is totally uninterested in any conversation on any other topic. On the other hand, I am all she's got and I cannot imagine distancing myself from her. I keep trying to tell her that she has to just keep trying to improve, that she is making progress and that, once she is more mobile, we can explore other options, but she has totally given up. She alternatively complains about not getting enough physical therapy (I just arranged to have it doubled) and does not believe that the PT she is getting is helping her (and sometimes refuses to participate). In short, I am at a loss and nearing my breaking point. Am I a terrible daughter for not renting her an apartment with an accessible bathroom (money, at least for now, is not an issue) and arranging for 24-hour private care? I am absolutely overwhelmed at the thought of becoming solely responsible for all of that, without the support that the nursing home and her senior living community provides, but then I think I am being incredibly selfish for thinking of its impact on me, rather than just doing what she wants.
If you have gotten this far, thank you for reading my somewhat incoherent ramblings. Any advice would be very much appreciated.
So the only options -- other than leaving her in the nursing home which is making her suicidal (though I don't think she will actually do anything, especially since she does not have the means to) -- is to move her in with my husband and me or to rent her an apartment and, in either case, to arrange for 24 hour care. I know that moving her in with us would be the end of my life as I know if, at least for now. Knowing myself, I would feel that I am always "on," even with the aides there, and could never get away from her constant needs. Our house is also really not handicap accessible, so there would be that to deal with. Renting her in an independent apartment where I don't really know what goes on also feels wrong. I'd worry all the time about how the aides were treating her (and she them), whether people were showing up on time, etc. And managing her medical needs on my own just feels overwhelming. There is also, of course, the cost to consider. She has enough money to cover maybe two years of 24/7 private care, but then what? Other than the effects of the stroke, she has no medical conditions and may live for many more years. So leaving her in the nursing home seems like the smartest option, but I just can't cope with her unhappiness.
I guess what I really want is for someone to tell me what to do (and for me to really believe that they are right). I know no one can do that, and that there is no good solution, but I have to somehow decide what to do and then try to live with it. The indecision and second-guessing is making me insane.
Then again, she may really be done. That’s what happened to mils sister. She was at home semi functional, them in a hospital that planned to discharge her to rehab. She went home with hospice, who were incredibly valuable as she was totally bedridden.
She passed away just before her 91st birthday.
You could try reading about traumatic brain injuries as that is basically what happens in a stroke. However, the stroke only happened a couple of months ago, there is a good chance she could improve from where she is now.
You have to do what you can for your own mental health, and that's leaving the professionals to handle things. You have to learn to practice selective deafness, use white lies to deflect her ("When the doctors say you can leave, we'll deal with it then"), and most of all, you simply have to learn to let her comments have no effect on you. YOU know they aren't true -- of course you're compassionate -- so you just can't let them land or take them to heart.
She's incredibly frustrated at her body having betrayed her by failing, but the doctors and therapists seem to be doing their job, and you are doing yours by letting the experts handle things. Your mom is not an expert in this area, and while I completely understand her distress as you do, all she has to do is get through another day and help the specialists help her. Just tell her that -- "Let's just get through today" -- and don't visit so often or for so long.
I do too think you visit too often. Telling Mom she needs to improve before you discuss other options is a good thing to say. When she hits that plateau, someone will need to sit in front of her, look her in the eye and tell her "this is as good as it is going to get". And that person should be the physical therapist not u. At that point, if SHE has money consider an AL if she meets their criteria. She may have to except that a NH is where she will need to stay.
I would not set up 24/7 care in an apt. If not using an agency, she would be their employer and that means deduction of taxes and sending them to the right agency. Aides have lives outside of their jobs and they get sick, kids get sick, or they just don't show up. And dealing with all those people. You can't work aides more than 40 hrs a week. 3 shifts during the week. 3 shifts on weekends with different aides. Thats 6 different personalities. Who is going to do their shift when they can't make it. It overwhelms me just thinking about it. By keeping Mom where she is, you do not have all that hassle.
You have to consider the impact on you. To set up 24/7 care for Mom in an apt is a big job. It could effect your health and your family. Just for easy calculation and using $10 an hour as the hourly rate it would cost 87,360 a yr for Moms care. Make it $15 an hour and your adding another 44k a year. This is if you hire privately. Agencies would be probably double than that that 87k. Add the cost of the apt. Food and utilities. Mom can stay in a NH for about 120k a year with no hassle. When her money runs out, she applies for Medicaid. Nothing should come out of your pocket.
Embrace it, because not everything CAN be fixed.
You are taking this on yourself, but this doesn't belong to you. Your Mom is the person who has had a stroke. Your time for that hasn't come yet (but if you continue taking on the ownership of the woes of this world it may come sooner rather than later). Your Mom, as you said, has never been happy. She has had a hard life, you tell us, to excuse the fact that happiness has passed her by.
Do you suppose that happiness lies now with your throwing your own life on the altar to Mom's illness? Do you imagine you can care for someone in Mom's condition 24/7?
Please embrace your limitations in this matter.
Please understand that Mom is old, she is ill, and medications are not helping her. Tell her you are sorry for that. Visit her when you are able. But do NOT TAKE ON THE FAULT.
You are not the cause of this.
YOU are NOT the CURE of this.
You are not God, and not even a Fairy with a powerful wand. You are a person with your one life to live who is (NOT GUILTY but rather-) GRIEVING to see what has happened to your Mom.
I am so sorry, but this is worth grieving. You are witnessing a woman who never had happiness when well, and who is now ill and suffering. That this has happened to her is NOT in your control. It is worth your grief and it is worth your tears, and it is worth knowing your limitations and helplessness and being sad over that.
But make no mistake. Sacrificing your life to this situation will help NO ONE, and will destroy the life you have. Your Mother has had her life. She has no right to yours. I am sorry if that sounds hard, but it is the truth. Be kind and loving to her. Give her your sympathy.
If you need help of a therapist in dealing with this see a Certified Licensed Social Worker who has private practice and is trained in dealing with life transitions work; that would be my choice.
My take is that you have not allowed for her to acclimate to her surrounding, you are in the helicopter child mode, 2 times a day for hours, why?
Have you spoken to the admin of the facility about this? 99% recommend that the LO stay away for several weeks so the resident can settle in.
She is where she needs to be, leave well enough alone, she cannot live by herself and you should not consider giving up your life for her. Your family should be your priority. You are self-guilting yourself for no reason.
Might be time to pull back and get your life back on track, she is manipulating you and you are falling for her little game of "If you don't do this, I'll do that".
Take care of you and your family.
Two thoughts- consider the possibility that no matter what you’ve done, or are currently doing, or COULD be doing now, there may be nothing that will make her situation different.
Second thought- you may be projecting your own intense frustrations and anxieties for her and not quite “reading” all the situations that are presently part of her history.
If anything I’ve said makes some sense to you, let me also mention that my own mother, a SEVERE agoraphobic during my entire life with her, had a “fatal” left temporal stroke at age 85, left the hospital two days later, and lived by herself until the age of 89, when she shattered her hip in a fall.
The subsequent hip surgery exacerbated and fully revealed dementia, and left her fully dependent upon me.
It took me 9 months of caring for her to realize that I was doing none of us any good by insisting I “…..could DO IT ALL”. When I placed her in the very fine residence where she’d previously received excellent rehab services, I was told to remain out of the picture for a few days until she could acclimate herself to her new surroundings. I did that.
Her placement ultimately resulted in the best 5 years of her life as a widow. She grew to love “her girls”, they LOVED her, and I was able to return to being a wife, mother, daughter…..
Spending 3-4 hours a day doesn’t sound like it’s working for either of you. You have ZERO reason(s) to feel guilty about anything you’ve mentioned in your caregiving. After you get a couple good night’s sleep, take the time to address this in yourself, and BE SURE to consider the fact that NO SOLUTIONS that you come up with may have a “good” result. THAT’S NOT YOUR FAULT. Most of us who are involved with long term care experience it.
You NEED to think of the balance between your care and her care. The more vulnerable you become, the LESS you will be able to appropriately offer her.
You are doing better than you are recognizing……
When she finally GOT home she was very down & wanted 'to walk again'.
Now she CAN walk a little. She wants the stroke to 'go away'.
Please try to accept the now.
It is not your fault. The stroke. It happened. It stole her independence. Your Mother is now a *stroke survivor* & life is forever changed.
Replace your word Guilt for Grief. It is OK to feel sad for what has been lost.
Then look for for positives in each day. Accept her new world. Help her adapt to her new world too.
If she were to go to a new place withiut all the care she is getting now you are right everything would fall on you and that is an unfair and impossible position for your mother to put you in.
Talk to her about all this and hope she will be one of the rare ones that sees this and won't selfishly insist in you sacrificing yourself just so she gets her way.
What a cruel joke life can play on us all in the blink of an eye. For her to survive a stroke but be rendered a shell of your former self. It is a bitter pill to swallow and I understand her anger and depression and her desire to go back to her pre stroke independent life. Unfortunately that isn't possible.
No you are not selfish. And no your mother probably won't change and will use this over your head for the rest of the time she has on this earth. Stay strong. Do not give in to her fantasy that moving into an apartment with aides will help.
And if she wants to die then she needs to have a DNR setup so she will get no medical intervention should she have another stroke or other medical issue.
SMART goals are:
Specific
Measurable
Achievable
Realistic
Time-bound (i.e. with a nominal deadline)
E.g.
I want to walk using my frame with prompting/support as required from one person
A distance of thirty steps
To the bathroom
To transfer to the toilet
By the end of this calendar month.
You keep them under review, too, and adapt to your mother's pace so that they remain stretching and worthwhile but not overambitious. You mustn't let her set herself up to fail.
The funds are there, you say, but whose funds are they? Please don't drain your own money!
Urologist? GI specialist? What on earth for?
She's had a major stroke, there's nothing mysterious going on (is there?) and these aren't really medical issues - they're rehabilitation issues. I know the system is completely different for you, but would you have access to the equivalent of our Bladder & Bowel nurses? These are the continence care trouble-shooters in our multidisciplinary teams who deal with all matters related: catheters (including flip-flows), stomas, retraining, scheduling, you name it. Their aim is to restore continence wherever possible, and to develop good, confident management skills when it isn't.
Please don't think I don't respect doctors, I certainly do. But above all your mother needs a holistic approach to regaining her abilities, and one learned specialist after another won't help that.
3-4 hours every day? What, in one lump? MUCH too long, for both of you.
Short and sweet is the rule with pretty much everything - with every routine and task, let "quit while you're ahead" be your mantra.
Fatigue and depression are extremely common after effects of stroke. As well as the therapy, your mother's brain needs LOTS of rest. Emotional lability is also common: try looking on her anger in the same way you would if she had a fever. It'll come and go. It's saddening because it must feel awful to her, but it has nothing to do with anything you're doing.
Do you live and/or work close enough to make the visits shorter but multiple times a day?
The therapy is good, but there is a law of diminishing returns here - more hours will not necessarily mean faster progress. Discuss with the therapist(s) what they'll be working on and what results you're all looking for. Set SMART goals. Keep a journal, too - I often encourage clients to read back through their notes if they're feeling despondent, because it can cheer them up to remember that three weeks ago they couldn't even stand up on their own, and they've come much further than they realize. You can say well done and wow look at you 'til you're blue in the face, but it's when people see "full support needed to sit to stand" changing to "able to stand and balance with frame" written down in the notes that they take heart.
Also, point out other tasks besides mobility that she can manage independently. I hope she's encouraged to wash and dress herself? - and there are others too. Examples (these are for domestic settings, but I'm sure you could adapt them): we don't bring a bowl of cereal to a client, we bring the bowl, the cereal, the milk. If the client can't help herself, she can at least say how much she wants of everything. If she can't manage to pour the coffee, she can add the sugar and stir it.
As for returning to her apartment: not being able to get her wheelchair into the bathroom is not a reason. That's what commodes are for; portable washing equipment can always be brought to her.
But the facilities available in the nursing home ARE a very good reason. This is where the therapists and others working with her have everything they need on hand; this is where she can focus on a concentrated period of recovery. Three months after a major stroke is not that long. See if you can agree with her that you'll review the plan - whenever you think, I'd suggest another four weeks to start with.
Key thing is visits - keep them short, and give each one a definite purpose, even if that's only a big hug and a fresh supply of underwear.
My opinion is very likely in the minority.
Since money is not an issue, I say:
take her out of the facility. Yes: get an apartment with accessible bathroom, 24-hour care.
Lots of work on your side. But you’ll have done everything to try to make things better for her.
You said she’s given up. It’s typical to lose the will to live when you go to a facility. It’s very rare that someone likes it, or tolerates being there, no matter how great a facility is. Anyway it might look great on the outside, but you never truly know what it feels like to live there, until you’ve - permanently - lived there yourself.
The money is there to help her. Use it.
I do understand that it means stress for you: organizing, etc.
No matter what you decide, I hope you’ll be OK, and your mother.
Work with her doctors to get her meds adjusted properly, and advocate for her....thats all you CAN do. Sitting with her for hours on end while she rants only encourages her to continue that behavior instead of adjusting to her new environment, in my opinion. Let her be...Visit for a short while and let her know you love her, but that YOUR mental health is suffering due to her negativity so you'll need to leave if she can't tone it down. Help her learn to COPE that way, instead of joining in the pity party. Look into what mental health therapy her insurance will cover and urge her to take advantage of it. If she believes in God, encourage her to pray for acceptance and guidance from God. Then leave. Otherwise you're going to absorb her pain to the point where YOU get sick. Only children feel their mother's pain to that degree, I know, I was an only child too. I had to learn how to back away from my elderly mother who was always threatening suicide herself since I was a kid. It's not fair to US and I stopped tolerating it.
The guilt trips are nonsense. You can put yourself in the poorhouse by getting her 24/7 private care and I guarantee you she will STILL be miserable and full of drama but you'll be bankrupt. You can't fix this, so stop trying and accept that her life is now in God's hands. She can make the best of it or she can snarl and scream and make YOUR life a nightmare. Either way, the outcome of her situation doesn't change. She needs to do the PT and give it time and patience to see what abilities come back and which ones are lost permanently. It's a waiting game and too soon to know.
Take care of yourself before she depletes you and you're sick. Then what?
Best of luck with a difficult situation.
Let the Nursing Home help her. They've seen it all before, guaranteed. You'll only drive yourself crazy trying.